Bereaved Manchester couple raise awareness of devastating condition that took the life of their twins

A bereaved family from Manchester are keen to raise awareness of a devastating condition which took the lives of their newborn twins Dottie and Poppy.

Thrilled to be pregnant with identical twins, Katie Monk was enjoying her pregnancy, especially after suffering an early miscarriage the year before.

Katie and husband Olly were given a leaflet about TTTS (twin to twin transfusion syndrome) and told to read it in their own time. But two weeks later a different consultant talked the couple through the condition as Katie was showing signs of TTTS and concerns were raised.

A detailed scan was performed two days later and the couple were referred to the fetal medicine unit at Saint Mary’s Hospital in Manchester where Katie was diagnosed with TTTS, a rare but life threatening condition which affects 10 to 15 per cent of twins who share a placenta.

Katie underwent a laser procedure at Birmingham Women’s hospital performed by Professor Mark Kilby, to try to give the twins the best chance of survival. This is where blood vessels are sealed to control blood flow between the twins and excess fluid is drained.

The procedure was successful, but sadly Poppy passed away a few hours afterwards.

Katie said: “When we found out Poppy had passed away we were devastated. We had just got used to the idea of having two little girls and now we had that taken away from us.

“Sadly as my waters had broken, we were given another devastating outlook for Dottie as she had very little fluid around her. We were advised that it would be likely that I would go into labour in the next 48 hours.

“Whilst we mourned the loss of Poppy we had to stay positive and relaxed for Dottie as she was a little fighter.

“We had a scan a few days later and were over the moon when she still had a strong heartbeat. We had a second scan two days later at the fetal medicine unit at St Mary’s in Manchester, where we were told that although she still had a heartbeat, there was no measurable fluid around her still, and this would mean her lungs wouldn’t develop.

“Our options were to terminate the pregnancy or to continue and try to make it beyond 24 weeks.

“After everything we had been through we couldn’t even consider termination and decided to give her the best chance we could which was supported by our consultant.”

Dottie battled on for another two weeks before she too succumbed to the condition and was born sleeping in her sister’s arms on October 13.

“The birth was the hardest thing I’ve ever had to go through,” said Katie.

“Everything happened so fast we didn’t really have much time to think of anything but we knew that we were about to become parents, albeit with an upsetting outcome.

“The bereavement midwives at North Manchester General Hospital were absolutely incredible during and after the birth, and made the delivery as smooth as possible. They were all so surprised as the girls were born at exactly the same time and holding onto each other which the midwives had never experienced before.

“We were so lucky that we were able to spend some time with the girls in the hospital after their birth, as were our families and used the Butterfly Suite which is fully equipped with everything we needed to be comfortable.

“The girls were kept in a cuddle cot which kept them cool. We were able to dress them and hold them, and that was so important to us. We sat and chatted with them, told them about the plans we had for them and why we had chosen their names.

“Spending that time with them was so valuable to us and gave us some cherished memories.

“The support we have had has been fantastic so far. The bereavement midwives at the hospital do such a difficult yet incredible job and it doesn’t end on the labour ward.

“We have had phone calls from them just to see how we are and home visits which was just like having a friend round. We have also been offered counselling through the hospital which is something we are taking up in the next few weeks.

“The hospital support hasn’t ended with that either as we have been invited to regular coffee mornings with other bereaved parents, and they hold regular ceremonies in their baby memorial garden. The bereavement midwife at Manchester also gave Olly information about a football team called Follo FC - a group of dads who have lost children at all stages of life.”

Now Olly, Katie and a supportive group of friends and family, are taking on the Great Manchester Run half marathon next year running as team Dottie and Poppy.

Some of the team, including dad Olly and his two brothers, are also going to run the 10k event on the same day.

The group are raising money for Twins Trust which funds vital research into TTTS and is the only UK-wide charity collecting data on the condition. You can support them here. https://www.justgiving.com/fundraising/team-poppy-dottie